multiple sclerosis
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15322
Today, I’m sick.
Not normal-every-day-having-MS-sick, but sick sick. Congestion and low-grade fever and dizziness and …. You know what I mean. And I haven’t been sick like this for … years, honestly. I took a Covid test (because those are the times in which we live) but it’s not Covid. Just your run of the mill sick – yay?
I thought a lot – as I struggled to do simple tasks – how much we all take our health for granted. Even me, with MS. And husby, with MEN1. Doing simple things – laundry and dishes and feeding myself — all so painfully exhausting, requiring so much focus. When I finally collapsed on the couch (after showering – which exhausts me on a normal day) it didn’t take long for me to nod off. But sleep is fickle when my body feels this way – I have to pee or my airways are stuffed or my throat is sore or … or ….or ….. The list is on-going. I think I was up every hour last night – even husby commented that it wasn’t a good night and left me in bed when he took Lucy to the vet.
It’s one of those days. At the beginning of one of those weeks. Time will keep marching, it always does, and life will continue. And the ebbs and flows will come and go. I just need to surrender to the ride. And since I’m so tired and feel like such poo, that’s just what I’m planning to do.
Xox, g
14322
Because temperatures were up and down like a (very active) yo-yo last week, I rounded out the weekend with a wicked head cold and a low grade fever. Not something to be terribly worried about except that I had a date with Dr. M today for my quarterly “Oh yes, you have MS” appointment at Penn Neuroscience and I *really* did not want to have to go through the pain of rescheduling.
When we got up this morning, John diligently checked my temperature (99.7 last night at bedtime) and it was a reasonable 98.8 so I told him we were rolling the dice. Healthcare in America is absolutely painful (and absurdly expensive) but I like it when I receive it and that was the plan for today.
It didn’t feel too early (and it actually wasn’t because medicine and MRI days are MUCH earlier drives into center city) but right now, as the clock reads 6.22p and it’s still bright and sunny outside, I feel disconcerted and my body feels confused. Light in the evening is great … except when it isn’t. And it’s not so great when I try so hard to adhere to a sleep schedule and then all of a sudden we aren’t eating dinner until nearly 8p and then not to bed until 10p and suddenly eight hours becomes seven hours and …. Well my mind is snowballing and my body feels exhausted.
Usually we see Dr. M on a Friday, so my whole week feels off-kilter because today is Monday and Monday is a yoga day, not a doctor day. And this Friday John leaves to go fishing for the weekend, so more things that aren’t routine. I’m becoming an absolute curmudgeon in my old age about routine and rhythm and order.
Daylight savings and messing with time is utter madness. I am NOT a fan.
Xox, g
13322
Woke up this morning knowing I was going to feel awful. Just didn’t realize how awful. I haven’t felt this sick in a minute but the weather and the poison ivy and a whole bunch of things combined to bring me to my knees.
I got up. Showered. Went through the rhythms of morning routine – Athletic Greens and vitamins and omegas and green smoothies and neti pots and I threw in a nice facial steam to loosen up the junk in my sinuses. I’m feeling … okay. But I know that it will take a couple days to fully recover from this and I have an appointment with Dr. M tomorrow … so my timeline is somewhat truncated.
Having MS is a funny, constant struggle to figure things out without there ever being a definitive answer. And even though I know that there are no answers, that there will never be answers, that sometimes one thing will work and then it will not … even though I know all these things, I still search. Because if I’m not searching, then in some ways, that means I’ve given up. And I won’t waste this precious life I’ve been given feeling defeated.
Going to rest today. Try to take care of myself. Remind myself to give grace. To take a moment. To heal.
Happy Sunday.
Xox, g
07322
Today was one of those massively efficient, got-lots-of-things-accomplished days. A lot like yesterday but not – John was working and I was doing Monday kind of things.
And then I took a wicked fall and it felt like life screeched to a halt.
My whole body hurts, especially my right hand and hip. I’m exhausted but afraid that I’ll wake up stiff and sore and still afraid to walk too far from something to grab onto.
MS. She’s such a motherf*cker.
Xox, g
04322
A few infusions ago, a man came into our room to tout the benefits of reiki. He explained that many people have found great relief through reiki. And then he paused and looked conspiratorially at us both. “And, I don’t want to — well, three nurses who were all trying to get pregnant had one session each and they all got pregnant!“. He smiled widely. My eyes slid to the side as I smiled weakly.
I’m not sad that women who wanted children were able to have them. I wasn’t sad that I don’t have children. I even believe in reiki and think it’s fantastic that UPenn has a program for patients. I was slightly annoyed by his pitch.
“Wrong audience,” I said to John as he left, leaning my head back to check my meds level.
Here’s my thing – we are all living on this Earth for our one life. Even if we get more, even if reincarnation is a real thing and we keep coming back again and again we won’t know because very few people remember their former lives and anyway, that’s beside the point right now. We get this life. This one, beautiful, precious, difficult, challenging, confusing life. What a cool miracle.
And so many of us just … live in a lane and a belief system and impose it on everyone else as though it’s the rightest of right ways to exist. As though I should want children, don’t I want children, isn’t it so sad that I don’t have children?
Not really.
I mean, for me, not really. I don’t hate kids – in fact, I adore my goddaughter and her brother and so many little humans that I’ve known across the years. But I don’t want my own. And even when – momentarily – I did think having kids would be excellent, I was never devastated when it didn’t happen.
This is just one example of society telling me – both loudly and subtly – what I should be doing and wanting in my one precious life. And I’m kind of over it.
I’d be fairly narcissistic to believe that my legacy will live on forever after I’m gone. So why shouldn’t I just embrace this time, this ride, and really enjoy as much of it as I can?
I think about this a lot when I’m hooked up to meds. Because every four weeks we schlep into the city so I can have drugs pumped into my veins in order to be able to live my one precious life the best way I can.
And that’s kind of what I want to do.
Xox, g
02322
There are days when I truly wish that I could look as awful as I feel. Because then maybe people would pay attention and have some grace.
I work hard to appear as healthy as possible – hydration and skincare and exercise (and a smallish shopping addiction haha). But today – feeling utterly horrible and wanting to just completely die – I wished that people could understand. And I knew – I always know – that they can’t. Healthy people cannot understand the Herculean effort that goes into existing in the world while constantly struggling with pain. It’s just not possible. Imagination can only go so far.
It’s another early night and I am vowing (once again) to start blogging earlier in the day. I feel like the sky is crashing down. I am so, so tired. I am in such pain.
It sucks.
Xox, g
26222
I feel like the car that is sputtering on the side of the road – sputtering but not turning over. Still trying, but too worn out to do much more than flail intermittently.
I’m not sure what triggered it but today I had a true moment of utter despair – a moment of terror and fear and defeat and desperation. I am tired. I cannot seem to get “un” tired no matter what I do. And the fear within me to be viewed as lazy or privileged drives me every day to push myself past the capacity of my body.
Fear of not being able to walk. Despair at becoming a person like my in-laws: completely uncaring about my environment or my health or the people I’m surrounded by. Defeat at not being able to keep going, to do the things, live a normal life. Terror at being directionless and lost forever.
What is rest? What is good sleep? What are the things I can do and keep existing without sputtering to a stop?
I am so tired.
Xox, g
21222
One of the things that I’ve been trying (and mostly failing) to learn is the difference between what is good for me and what I *think* is good for me.
Case in point – it pains me to take my Apple Watch off if I haven’t hit my goals – not just my red green and blue rings but also my step count. Tonight I am going to sleep short about 1500 steps. Because what’s good for me (rest) trumps what my watch says (walk longer). I know this because I am always learning the nuances of my disease and today – with its huge temperature changes – slayed me and my poor, lead weight legs. I don’t need to push my body any further, I need to rest it. But those steps will haunt me and I will try to make up for them the rest of the week.
Knowing and doing are two very different things. Knowing tells me I shouldn’t eat gluten or dairy but … when a Reuben sandwich presents itself, I have a hard time saying no. Knowing says respect your body but doing says “Use it or lose it,”. And with MS, that’s a true and highly likely possibility.
I’m going to go to sleep now and try to be gentle with myself this week as the temperatures bob back and forth between spring and mid-winter. I am going to try.
Xox, g
20222
Some days I don’t feel well and I know what the issue is. I ate something wrong, I didn’t sleep well, etc etc. Today I couldn’t quite put my finger on it. But it was an MS-y kind of day. Aches and pains and stiffness and fatigue. One of those days where I’m working hard just to be human.
When I was first diagnosed I swore I wasn’t going to change anything about my life. I wasn’t going to let this disease change me, change the things I loved, change the shape of things. But life changes the shape of things, we learn and we grow and we make better decisions. Some of us get pushed in that direction, but I think most of us eventually get there.
I’ve known for a long time I was going to have to make big diet changes (ones that I sincerely don’t want to make – hence dragging my feet). Today reaffirmed it with a vengeance. As I sat in the darkness of the movie theatre and reconciled with myself that I knew exactly what was making my digestive system revolt; I could either continue to suffer or make the changes I need to make. I felt both sad and resigned. And painfully, painfully tired.
Adulting is hard work. Whether it’s making responsible financial decisions, or changing my diet, I find it a struggle every day. Where do I compromise, where do I stand firm? What’s worth it and what isn’t … and what are the consequences.
It’s a little after seven at night and I’m calling it a day. I’m flat out exhausted, my body is spent, and there is no reserve of energy to pull from. Today is done.
Xox, g
15222
It’s very hard to think about much else than the pain, fatigue and brain fog when I have a headache. And because I get them so frequently, I have learned some coping mechanisms and ways to get through the days … but I have yet to figure out how to make their duration shorter (its usually a solid 48 hours or more) or how to lessen the pain.
I don’t want to talk about pain and headaches and exhaustion and MS every two or four weeks. It’s boring and repetitive and really, how much more is there to say? (Hint: Not much). But when I’m in it, I’m in it. And the past few days I’ve been really, really in it. One of my worst headaches in awhile. Unendurable pain (which of course, is endured because what is the alternative?), inability to sleep and a very effed up digestion due to pain meds and most foods making me want to vomit. (Don’t worry, I never lose weight, much to my chagrin). Lucy even went to stay with her Zia and Noni because I was unable to take care of her, and John has been gone taking care of his Dad every day since Saturday.
I want to sleep tonight, so very desperately that it’s hard to articulate. I want to sleep and wake up tomorrow on the other side of the pain. Able to think about other things, able to eat food other than toast.
Last summer I made an appointment with a neurologist about my headaches but then never went — determined to solve the problem on my own without strong drugs. I think I’ve passed that now — I think I would take just about anything if it stopped the pain. Which is a desperate place to be.
I promise to try not to talk about headaches next time I get one and I apologize that the past few days have been brief and a little loopy.
Xox, g
D5 Creation